Clinical Network for Paediatric Tube Feeding

Purpose of the Network

The New Zealand Clinical Network for Paediatric Tube Feeding was established in July 2015, to support optimal clinical management of children and infants receiving prolonged tube feeding and to promote progress toward normal oral feeding where clinically safe and functionally possible.

Mission Statement

Our aim, as a multidisciplinary clinical and consumer network, is to support optimal management of tube fed children. Our goal is for each child to reach their maximum potential for oral feeding

Scope

The Clinical Network aims to engage with a range of health professionals and health care settings where infants and children receive prolonged tube feeding and related services throughout New Zealand. A key principle of our work plan is to work collaboratively with families who have or are dealing with tube feeding to inform what we develop. 

Activities

The range of specific activities with which the network is engaging are across the following domains:

  • Improved information for families

  • Consistent evidence-based guidelines for clinical teams

  • Fostering links with clinicians with expertise nationally

  • Developing a learning system that informs continuous quality improvement

Who is in the Clinical Reference Group?

  • Dr Tim Jelleyman (Clinical Lead), Clinical Director (Timothy.Jelleyman@waitematadhb.govt.nz)

  • Mari Komp (Clinical Facilitator), Dietitian (Mari@kompletenutrition.co.nz)

  • Dr Alison Daniell, Paediatrician

  • Peaario Bradbeer, Speciality Clinical Nurse Paediatrics

  • Catherine Wheeler, Paediatric Dietitian

  • Emily Jones, Speech-Language Therapist, Clinical Educator

  • Elizabeth Maritz, Dietitian

  • Jennifer Douglas, Dietitian

  • Linda Chard, Clinical Psychologist

  • Mandy Beatson, Paediatric Speech-Language Therapist

  • Mary McNab, Paediatric Dietitian

  • Sarah Leadley, Psychologist and Behaviour Analyst

  • Dr Warwick Smith, Paediatrician

  • Sarah Vane, Consumer Representative

Clinical guidelines produced by the Paediatric Tube Feeding Network can be found on the Starship Guidelines.

The role of the Multidisciplinary Team (MDT) in transitioning from tube to oral feeding

Tube feed weaning is a complex transition process for the child and family/whanau requiring a multidisciplinary approach and speciality skills.  Assessment and intervention programmes need to be tailored specifically to meet the child's individual needs in the context of his/her family/whanau and environment.

Children with feeding problems are best managed by a multidisciplinary team with paediatric feeding experience. Although guidelines give suggestions for assessment and management they are intended to be used by the relevant professionals and do not replace the need for each discipline's part in the team.  Professionals need to be aware of their discipline's scope of practice and remain within it. In some areas not, all members of the optimal multidisciplinary team will be available or may not have enough training and experience in Paediatric feeding. In this case consultation with or referral to experienced professionals from another centre should be sought.

Dietitian 

Dietitians in New Zealand are registered and apply scientific of knowledge about food and nutrition to promote optimal health outcomes. They have the necessary expertise and skill to contribute to assessment and management of paediatric feeding to provide targeted nutrition interventions. Management of enteral feeding is a restricted scope of practice for Dietitians and all children on tube feeds should have either a Dietitian or Paediatrician to manage enteral feeding regimes. Dietitian prescribers can prescribe specialised feeds and nutritional supplements. 

Role in transitioning from tube to oral feeding in children - Dietitians will: 

  • Assess growth (weight and length) and ensure this is optimal for the child's age. 

  • Assess current nutritional intake and compare with estimated nutritional requirements for age and growth.

  • Provide education for whanau/ families to provide appropriate food choices and supplements for their child within the cultural context of the New Zealand population

  • Adjust tube feeding regimes to suit medical condition, lifestyle requirements (e.g. breaks) and tolerance levels

  • Prescribe tube feed according to medical condition and nutritional requirements

  • Assess oral food and fluid intake and reduce tube feeds when oral intake is adequate

  • Support family as tube feeding volume is decreased and measurement of growth and health parameters in conjunction with medical team

Speech and Language Therapist

Speech and Language Therapists (SLTs) provide life-improving treatment, support and care for children who have difficulties with communication, feeding and swallowing.  They also assess, treat and develop personalised plans to support infants and children who have feeding, eating and swallowing problems, including tube-feeding dependency.  Using specialist skills, SLTs work directly with clients, parents, and carers and provide them with tailored support.  They also work closely with teachers and other health professionals, such as doctors, nurses, and other allied health professionals to develop individual treatment plans.

Role in transitioning from tube to oral feeding in children - SLTs will: 

  • Assess swallow safety for oral feeding potential.

  • Assess and facilitate the child's oral movements during feeding.

  • Assess and facilitate the child's oral sensory skills for feeding.

  • Provide education regarding feeding development and milestones.

  • Recommend food consistencies appropriate for the child's feeding skills.

  • Encourage parent-child interaction and modelling of appropriate feeding skills/behaviours at mealtimes.

Psychologist

Psychologists apply psychological knowledge and theory derived from scientific research to the area of mental health and child development.  Psychologists are trained in behavioural and developmental principles that are particularly applicable to the area of development of oral feeding in children.

  • Assesses for readiness and motivation for tube weaning 

  • Provides assessment and treatment options to caregivers and child regarding co-morbid emotional and relationship concerns. 

  • Provides assessment, education and support to the parent(s) regarding the application of behavioural management principles (e.g., differential reinforcement, shaping, modelling, extinction and redirection). 

  • Provide general limit setting education and guidance to parent(s) to improve management of behaviours outside of mealtimes.

Home Care Nurse/Paediatric Nurse Specialist 

Community Paediatric Nursing provides specialised support for children and their families within the community environment, including liaising with Well Child Tamariki Ora providers as required. The Community Paediatric Nurse may provide a link between the parent/caregiver and members of the multi-disciplinary team. 

Community Paediatric nurses enable children to remain as much as possible in their home, providing assessment and management of enteral feeding by providing the following;

  • Facilitate supplies

  • Education- nasogastric (NGT) and gastrostomy care

  • Re-insertion of NGT and gastrostomy devices

  • Monitoring growth in collaboration with the Dietitian

  • Review of child's respiratory status/ general wellbeing

  • Problem solving- feeds/pumps

  • Support with re-introduction of oral food/fluids

Occupational Therapist

Occupational therapy is a client-centred health profession, concerned with promoting health and wellbeing through occupation and participation in activities of everyday life.  Occupational Therapists enable children to do what they need and want to do in their everyday tasks, activities and routines.  This involves assessing the child's performance and abilities and identifying the skills needed, and any challenges/barriers that may limit the child reaching their specific goals, as well as adapting and/or modifying identified tasks, activities and routines and/or environmental factors to better support the child's occupational engagement. 

In relation to tube feed weaning, Occupational Therapists may contribute to the assessment and management of the child's eating and drinking by: 

  • Assessing the child's readiness for eating/drinking with the Speech Language Therapist.

  • Optimising the child's position and seating for eating and drinking in the home and community environments.

  • Advising/coaching around mealtime management strategies in collaboration with families and carers, including mealtime environment to promote a positive experience for the child and family.

  • Assessing and addressing any potential sensory processing and self-regulation difficulties that may impact negatively on the child's performance and eating and drinking routines. 

  • Formally assessing general development to ensure a 'whole-child' approach is considered.

Social Worker

Social workers assess the social, psychological and emotional situations of individuals to identify their needs as well as those of their family. They also offer supportive counselling by linking families to practical services available within their community.  DHB Social Workers are registered.

Role in transitioning from tube to oral feeding in children - Social Workers will: 

  • Psychosocial assessment

  • Identify barriers to tube feeding/weaning

  • Providing access to supports/respite

  • Mediate between family and medical/allied health team where there are conflicting opinions

  • Advocate on behalf of family

  • Set up professionals' meetings

  • Reinforcing feeding plan 

  • Supportive counselling

Doctors (Paediatrician, General Practitioner, Sub-Specialists)

Children with feeding difficulties requiring enteral feeding or the consideration of enteral feeding should be under the care of a Paediatric Specialist with relevant experience of the condition and feeding issues. This may require consultation. The medical role includes assessing for any medical conditions and reviewing the indications for tube feeding. The goals may be short term, long term or working towards weaning. The Doctor is responsible for the decision to place the tube in collaboration with the MDT and family. The care needs to be child focused with the safety and well- being of the child of paramount concern. The Doctor, along with the Dietitian, needs to consider the risks and manage any re-feeding syndrome, if the child has had suboptimal nutritional intake. Longer term the route of feeding and the need for gastrostomy placement needs to be considered. The Doctor is responsible for reviewing all medications and considering their route and form. Reflux and aspiration, constipation, dental care and child protection issues need to be considered and managed along with the MDT.  Inter-current illnesses and tube problems may be managed by either the feeding team or General Practitioner. During the weaning process the doctor is specifically responsible for determining the acceptable parameters of growth or weight loss and assessing hydration with input from the Dietitian and Nursing team.

Well Child Tamariki Ora Service

The Well Child Tamariki Ora (WCTO) services offer care to all New Zealand Families and whānau for children aged from birth to 5 years old.

The early years of life set the foundation for lifelong health and wellbeing. The WCTO services assist families and whānau to improve and protect their children's health which could be in the form of information sharing (Health Education) or working in collaboration with other health services. They also serve as an important gateway to targeted and specialist health, education and social services for children, families and whanau with additional needs.

The WCTO services are provided by several people, these may include but are not limited to:

  • Lead Maternity Carers (Midwives, Obstetricians and General Practitioner)

  • WCTO nurses (e.g.  Plunket, Starship Community Nurses, Māori and Pacific Health providers)

  • Nurse Practitioner

  • General Practitioner

  • Community Health Workers

  • Hearing and Vision Technicians

  • Authorised Vaccinators

For further information on PSNZ / MoH Clinical Network development, please contact PSNZ CEO, Mollie Wilson, mollie@healthnetworks.co.nz or PSNZ Secretariat Denise Tringham, denise@paediatrics.org.nz